PQMD Virtual Workshops: Charitable Access Programming for Rare Diseases

  • March 23, 2021
  • April 20, 2021
  • 3 sessions
  • March 23, 2021, 10:00 AM 12:00 PM (EDT)
  • April 06, 2021, 10:00 AM 12:00 PM (EDT)
  • April 20, 2021, 10:00 AM 12:00 PM (EDT)
  • Zoom link provided with confirmation

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Access to medicines is particularly challenging for rare disease patients, in any country, even after the treatments have been approved and made commercially available. However, the challenges are especially compounded for rare disease patients in low-income countries, who often have no treatment options for many reasons including lack of accessibility, affordability, and availability. This is further complicated by weak healthcare infrastructure, physician capabilities, diagnosis availabilities, and overall absence of disease education.

Pharmaceutical companies are often challenged with putting charitable programs in place for rare disease patients and many considerations play a critical role in designing and developing such programs. Of note is the multi-stakeholder cross-collaboration across functions and the need for a keen focus on sustainability. Further complexities are added when the therapies in questions are considered high-touch and high-value products requiring enhanced logistical capabilities.

The goal of this 3-part workshop (2 hours each) is to provide the industry with examples of best practices from around the world in charitable access programming. While there is not a single model or template that may accommodate the needs of the entire rare disease industry, we hope these workshops provide participants with the perspectives and tools to successfully plan, design, and implement customized programs to meet their very specific needs (both from the patient and the company’s perspective). The sessions will include presentations and case studies from experts who have run similar programs for rare diseases.

These workshops are meant to be a collaborative effort across the rare disease industry and as a result, we hope to initiate and develop a set of guidelines, filling a gap that currently exists on how to appropriately donate rare disease therapies.

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